Like most folks nowadays, Francine Rinaldi is tethered to her cell phone.
It’s there by her side, night and day.
But she’s not trolling social media for tidbits of juicy gossip or toying with some face-morphing app.
The Somers mother of three is waiting for it to ring with some news that, for her, could literally be life or death.
Rinaldi’s kidneys are only functioning at about 20 percent and her liver is painfully enlarged due to autosomal dominant polycystic kidney disease (ADPKD) and polycystic liver disease (PLD).
Her brother has the same condition, although his—at this time—is less severe.
About 10 percent of those diagnosed with it have no family history of the genetic disease. The theory is that it develops as a spontaneous, or new, mutation.
However, if there is more than one person in the family with ADPKD, that means it is hereditary, Rinaldi said, although no one else in their immediate family has it.
WHAT IS ADPKD?
ADPKD causes fluid-filled cysts to develop in both kidneys, and, in Rinaldi’s case, her liver as well.
It is the fourth leading cause of kidney failure. More than half of those with it will develop kidney failure by age 50.
The problem is, an individual can be asymptomatic until the situation becomes dire.
Rinaldi found out that she had ADPKD in her 30s, shortly after the birth of her second child. She was subsequently closely monitored for kidney function and blood pressure, which can be affected by the disease.
But things finally progressed to the point that, two years ago, Rinaldi was placed on the transplant list for both a liver and a kidney.
Once someone develops kidney failure, dialysis or a transplant are the only options.
Neither the 55-year-old nor her brother have had to go on dialysis yet. But cysts in the liver, an organ prone to bleeding, is another thing altogether.
Hers is so enlarged that it is crowding other organs such as her lungs and stomach, causing pain and, at times, nausea and shortness of breath. Trips to the emergency room are becoming more and more frequent.
Rinaldi’s brother is expected to be placed on the transplant list this week.
The United Network for Organ Sharing keeps track of everyone in the United States in need of a kidney transplant and matches them with donors.
The UNOS waiting list does not prioritize those who have been on it the longest. It uses a complex formula, weighing the following factors: the recipient’s age, the blood types of the donor and the recipient (Rinaldi’s is type A positive), the size of the donor kidney compared to the size of the recipient’s; urgency; how long the recipient has been waiting for a kidney; and the distance between recipient and donor.
Rinaldi can’t travel further than two hours from her Somers home lest she get that crucial call telling her that a kidney has been found.
This makes it difficult, if not impossible, for her to visit her three children.
Son Jesse, 23, is employed at the Aberdeen Proving Ground, a U.S. Army facility in Maryland, a three-hour-plus drive away. Her youngest daughter, 18-year-old Jordan, attends the University of Delaware, almost three hours away.
Her middle child, 20-year-old Jenna, goes to Marist College in Poughkeepsie. And even though that’s only an hour away, it’s still a problem to get there.
Her enlarged liver makes it painful for Rinaldi to drive, so she has had to rely on the kindness of friends when she wants to go places. But she’s reluctant to burden them, knowing that she has to “drop everything and run” the second her cell phone rings.
Now that all her children are almost out of the nest, Rinaldi would love to have a job or volunteer for some worthy organization, but she can’t because of her situation.
“I feel so trapped; it’s very frustrating,” she said. Referring to her phone, she said, “I feel like it’s my third arm.”
Still, Rinaldi’s beyond grateful for her family’s and friends’ help and the unwavering support of her husband, Thomas, who is also her designated caregiver. Her sweet calico kitty, Pumpkin, is also a big comfort.
One of the requirements for being on the organ list is having a full-time caregiver, she said. That’s the reason she can’t look to
Thomas, the family breadwinner, for a kidney, even if they were a match.
“We have three children. We can’t both be down at the same time,” she explained.
Rinaldi’s story is complicated because two organs are involved. However, her doctors recently told her that if she gets a kidney from a living donor, she will likely be able to get a liver from a deceased donor almost immediately—probably even while she is still in the hospital recuperating from the first surgery.
She was reticent about reaching out to the public for help until Jordan, seeing her normally vibrant mom’s health fading, put her foot down.
Rinaldi also got a mystical nudge from a tarot card reading during which the facilitator, sussing out Rinaldi’s health worries, gently asked why she wasn’t being more proactive.
She had stopped going on a PDK Facebook page because it was getting “too depressing.” But last week, it “just popped” onto her feed and Rinaldi couldn’t stop herself from checking in.
There was a posting from a woman who had given part of her liver to her pastor about four months ago and had found it such a life-affirming experience that she was looking to donate again. She also wanted to bring awareness to living organ donations.
Rinaldi messaged her and the two have been texting each other since.
The Dutchess County resident was advised by medical experts to wait a year before she could donate again.
While Rinaldi can’t wait that long, she told the woman about her brother, who probably won’t need a transplant for another year or two. A lover of animals, the 58-year-old veterinarian has the same blood type —O positive—as the aforementioned donor.
Whatever the outcome, Rinaldi has nothing but admiration for anyone willing to make such a significant sacrifice.
“There are definitely angels who walk among us every day,” she said.
HOW TO HELP
To put your name on a list as a potential kidney donor, log onto New York-Presbyterian/Weill Cornell Medical Center’s website, Cornell.donorscreen.org/register/donate-kidney.
Enter your email and other pertinent information, sign a HIPAA (Health Insurance Portability and Accountability) release form, and wait for a medical screening questionnaire.
Testing for blood type and so forth is done free of charge and takes less than a day.
Potential donors can specify where they’d like their organs to go by listing the person’s name and birthdate. (Francine’s is 7/14/64.)
If you’d like to just chat with Rinaldi directly, email her at email@example.com.